Husband age 49 just diagnosed

Angel 4

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Jan 27, 2022
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Essex
Sarakb and angel4 I wonder if we could catch up or chat together. I’m not sure of best way to do it. I tried to send a private message to you both but can only send to one at a time. Any ideas?
Hello, sorry I’ve only just seen this message. I would really like that but I’m not sure how to do that in here either? Is really like to catch up x
 

Sarahkb

Registered User
Apr 3, 2022
55
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I’m feeling overwhelmed with decisions today that I know I need to make but feel so hard. We have been offered respite as the children are so affected at home snd I desperately need time with them and a calm family home for a while but i am struggling to accept it I feel so sad and can’t stand the thought of this actually happening even though I spend a lot of time totally fed up with him and his difficult behaviours. I feel overwhelmed with grief.
Also, I want the children to have a short break, 2 nights, by the sea before they go back to school and the only way for this to be really relaxed for them is to take them by myself. But I just can’t bring myself to book the accommodation. It feels so devastating. Like the end of family life snd how holidays should be for us, can’t cope seeing families enjoying themselves while my childrens daddy is at home.
Struggling accepting the reality of everything I think. Have been in denial to avoid all the pain.
Thank you for letting me get all this out.
 

update2020

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Jan 2, 2020
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I’m feeling overwhelmed with decisions today that I know I need to make but feel so hard. We have been offered respite as the children are so affected at home snd I desperately need time with them and a calm family home for a while but i am struggling to accept it I feel so sad and can’t stand the thought of this actually happening even though I spend a lot of time totally fed up with him and his difficult behaviours. I feel overwhelmed with grief.
Also, I want the children to have a short break, 2 nights, by the sea before they go back to school and the only way for this to be really relaxed for them is to take them by myself. But I just can’t bring myself to book the accommodation. It feels so devastating. Like the end of family life snd how holidays should be for us, can’t cope seeing families enjoying themselves while my childrens daddy is at home.
Struggling accepting the reality of everything I think. Have been in denial to avoid all the pain.
Thank you for letting me get all this out.
I’m glad that you feel able to come on here and share. You are getting help, which is fantastic, but the feelings are so hard, especially where children are concerned and you are the one trying to keep everyone happy and do the best for them all. You are a remarkable person and I think you and your children deserve that short break. . ❤️❤️❤️
 

Sarahkb

Registered User
Apr 3, 2022
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Thank you. Don’t feel like that. Feel like I’m not meetings anyones needs im so overwhelmed with grief, stressed so many things, constantly shouting. Just don’t want to accept this is really happening x
 

update2020

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Jan 2, 2020
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Thank you. Don’t feel like that. Feel like I’m not meetings anyones needs im so overwhelmed with grief, stressed so many things, constantly shouting. Just don’t want to accept this is really happening x
Have you thought about getting counselling for yourself? I did twice and it really helped. xxx

I don’t think it helped me accept it exactly but it did help me to think that I was doing the best that I could and making reasonable decisions in an unreasonable situation (literally). It’s not a quick fix. I still have bad days. But it definitely helped.

I hope that you do take that break with the children. The other thing I had to do was take a break for myself. It was incredibly hard to organise but even if it was just an hour doing something for me occasionally it was so important. Can your children stay with other relatives occasionally to give you a break?

I really felt that I let my children down. There were mishaps along the way. But I can say now that they have both come through it well and live normal, happy lives.
 
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update2020

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Jan 2, 2020
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Goodbye @Sarahkb . I have been so impressed by your courage and resilience. And I do empathise with your experience. I really wish you and your children strength and love in the future. I’ve decided to stop posting here as I no longer feel that it is good for me. If you want to stay in touch privately then I’d be happy to do that via direct messages but that is entirely up to you. Good luck and god speed. xxx
 

Williej25

New member
Aug 28, 2022
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Hi I am new here and am just reaching out for some advice and support. My husband age 49 has just been diagnosed with early onset dementia, frontotemporal. We have 2 children age 10 and 6. My 10 year old has additional needs including autism and requires continual support. My husband has deteriorated rapidly. He can no longer work, manage money, struggles with basic parenting tasks. He has developed a scratch card habit, has started being obsessed with money including taking money out of my purse. I have had to take his name of bank accounts. He was a mortgage adviser so this is all very heartbreaking.
He has become very aggressive and angry towards me which I am struggling to cope with. Not only the emotional impact on me but obviously my children. Our family life has been turned upside down, they hear their dad shouting, threatening to leave etc. school are providing support for them to manage their feelings etc but I am so worried. I have tried to explain and they know daddy has dementia. I feel that I am not meeting anyones needs, my children or my husbands. It feels impossible to manage my sons additional needs and my husbands and I don’t know how much longer I can cope or have home life like it is for the children.
Just wondered if there was anyone else with young children like me as I’m Struggling to meet people in my situation. Thank you
Hi Sarah, I have total empathy for you and your family, it sounds like you are doing your very best, joining this forum will be a huge support. Firstly, cannot recommended contacting the memory clinic, they have done wonders for us, day trips , visits for my partner and even counseling for myself and my Son, my partner has early onset dementia too, diagnosed last November. Apply for PIP for your husband and LPA, social services will assist with filling out documents on your behalf, explain you are a full time Mum. It is vital that you take time out for yourself, accept any help from
family and friends. Ask questions and vent, this forum will help you, we are all here to support. Lots and lots of love x
 

Sarahkb

Registered User
Apr 3, 2022
55
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Thank you so much for taking the time to message. It really helps hearing others experiences. The memory clinic said there is nothing more to do as he is under the community metal health team, specialist team for dementia. They have provided a short term support worker, takes him for coffee once a week for couple hours. Still waiting for social services to deliver their care package, of support worker 3 times week.
I just don’t feel he is being helped or protected enough. Since my original post he is more vulnerable and struggles massively with social skills, rules, communication, like he has no filter.
Yesterday a friend saw him being told to leave the local supermarket and banned. No Ionger aloud in. He had been pinching chocolate. Following people around the store. He got angry apparently when told not allowed in again. 2 mums from school work there and it was another mum who saw him. Makes me feel really worried as it’s only a small town. He would never tell me. I find the reality out through chance and others.
He is now banned from the two major supermarkets in our town.
He is so vulnerable, all he has to do in a day is go walking but that basically means wondering around the shops, asking people or things for free, really strange socially difficult behaviours.
He has been referred to safeguarding as he was falling for scams on his phone. I have found 30 gift cards (Amazon, etc) I think people promise him money.
I just want him to listen to me, to accept my help, to let me look after him but his behaviours are just so difficult to keep on top of and I feel the children and myself are at risk by default. I found an application for a credit card, the pin arrived in the post. I’ve spent the last year getting serveral large loans written off.
His deterioration is rapid. I am scared I’m missing opportunities, already have really, of doing essential bereavement type stuff, like memories for the kids, getting letters written for the children I don’t know really, just things. We’ve lost him before we realised, so much I would have done if I had known. From simple things like a meal out together to a weekend away. Both those are extremely difficult now.
Long post I’m sorry.
 

Violet Jane

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Aug 23, 2021
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@Sarahkb, I'm so, so sorry. It's horrendously difficult for all of you. It is so hard for you having to juggle everything and seek support and information from many different sources. No wonder you are feeling overwhelmed.

This is a very difficult and personal decision - and I hope that what I am about to say will not cause offence - but I wonder whether you are approaching the point where your husband needs to move somewhere else for your children's (and your) wellbeing. I am thinking of some sort of sheltered / extra care housing. I really hope that I have not upset you by saying this.

The other thing that I am wondering is whether there is medication that your husband could take because his behaviour is obsessional or seems to me a form of agitation. Anti-depressants might help as well.

Please try not to reproach yourself for missing opportunities to do things. It sounds as if your husband has deteriorated very suddenly without warning. You are doing your best and that's all you can do. Support services are inadequate, particularly for younger dementia sufferers such as your husband. I hope that you are getting support and practical help from family and friends but I know that people can prove disappointing when you need them to step up.

Are you getting any support from Admiral Nurses?
 

Sarahkb

Registered User
Apr 3, 2022
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Thank you for your kind words. We don’t have admiral nurses in our area. We have been referred to the local hospice who will provide play/art therapy for the children and some counselling for me.
I have started to think about whether our time together would be happier and less stressful/fraught if he ‘visited’ us rather than loved at home. But the thought of him out is just to hard to accept. Dreading it, think I’ve really been in denial and hoping we had longer.
Also I’m really worried how I will manage financially. We have just got pip, get roped up with universal credit, without this I will struggle to meet living costs and really do not want to have to sell and move.
Just all so unreal in many ways. I have a overly supportive family, they are impacted too worrying about me and the children but their understanding is limited and their focus is me, they don’t get the grief or loss part. Thrust think it would be easier if he wasn’t at home and problem solved to some extent. Thank you again.
 

Izzy

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Aug 31, 2003
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@Sarahkb some time ago I contacted admiral nurses by email and they were really helpful. They also have a support phone line which might be helpful. I noticed they do virtual appointments but from this link it looks as if there might be a bit of a wait.

 

Weasell

Registered User
Oct 21, 2019
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I am not quite sure if my post is premature for your circumstances, I apologise if this is the case, but it’s a bit of an auction lot so maybe something will be of use?

My thoughts are that he will likely need full time care in the future.
What worries me is that the care costs for a 49 year old male capable of displaying challenging behaviour are unbelievable to most people. Provision is like gold dust. No one wants to foot the bill.
To help yourself in the future I strongly recommend you teach yourself the mental capacity act.
I hope this doesn’t sound ridiculous? Start with getting an easy read version. The act is actually quite simple. There may be extra resources on you tube or even free to use training courses online.
If you don’t understand the act you make yourself vulnerable to the professionals running rings around you in the future.

There are two main ways he will go into care if you can’t pay.
Social services up the care package to four visits a day then admit defeat. I think this route less likely as I guess he can most likely shower dress and make a cup of tea?
He will be sectioned. That is they will use one section of the mental health act to detain him.
Whatever route the future takes you your best friend is evidence. IF IT’S NOT WRITTEN DOWN IT DIDN’T HAPPEN. You need to start documenting everything. I would consider communicating with the mums at the supermarket, that it is in your best interests if the police are called to any incidents. This way evidence is compiled.
Also should any anger incidents occur at home called the police immediately as a referral will go to the mash team. ( multi agency safeguarding team.)

Consider paying the post office to redirect all the mail , to one of the family, if they lives near enough. That way he can’t remove Bailiffs letters or other horrors that might be coming your way.

If you have a landline get the free call screening on the phone. It can deter some of the fraud calls.

Scratch off the three numbers on all the credit cards in the house. ( After first making a note of them and storing that information).

If you have an iPhone, then purchase an airtag. The iPhone shop were offering free engraving. Get your mobile number engraved on the airtag and purchase a key ring holder for it. Pick the right moment, then say in a very loving way. ‘I have purchased a gift for you, my mobile number is on it so should you ever lose your phone you will be able to contact me easily.’
His behaviours place him at risk of conflict, and if something goes wrong the airtag gives you a very real chance of being able to track him.

Don’t underestimate the type of dementia he has. One person with similar spend 12 grand importing a racehorse, for reasons only known to themselves. He can’t listen to you and accept you help because his brain has been damaged, with progressive brain disease.

I presume you have both the LPA’s. My personal tip is when the LPA’s are printed then make sure three copies of the signature sheets are printed. This way if someone messes up the signing, you simply whip out another one and say ‘ that was only the practice sheet here is the proper one’. The delay between having to trot off and print a new sheet and the person then deciding ‘ this isn’t meant to be’ is too high not to go to that tiny extra effort.
Wishing you well.
 

Violet Jane

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Aug 23, 2021
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I am very wary about mentioning this but Social Services may become involved if they think that your children are being put at risk by your husband's behaviour. This might or might not lead to a good result for you and your children. I can only recount the story of a friend of mine. She was sought support for her severely depressed husband but inadvertently ended up getting entangled with Children's Services who were only interested in her children and not her husband. She had reported that he was driving erratically and was worried about knives in the house. He was also quite emotionally abusive to her (I'm not sure about the children). SS insisted that he move out but she didn't want that. She got very close to having her children taken into care because she didn't want to split the family up. Eventually, he did move out. He had ECT and had a good result and moved back home again but the depression returned within a few months and he became very difficult again. He subsequently died, apparently following a cardiac event (although I do wonder whether it was suicide but this was not disclosed to other people), and, although it seems dreadful to say this, it was an end to what had become an intractable problem.
 

Weasell

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Oct 21, 2019
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Yes @Violet Jane makes an excellent point. Once children’s services become involved, you will lose control. That was kind of what I meant when I mentioned my post being premature. My comments about keeping personal records stand whatever.
I did have one other thought. If you explained to the professionals that will be visiting , your concern over future finances and the fact it was causing you stress , would they be able to get you free advice from an expert who could tell you exactly how things work?
Bear in mind if you downsize half the money would be your husband’s and there is a risk of this going to care costs?
 

Sarahkb

Registered User
Apr 3, 2022
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Thank you for taking the time to reply snd for your advice. It’s so much to have to think about. I feel I can’t trust anyone to really help us as a family or give honest advice as all based on money and I really don’t want my children involved in it. We were such a normal happy family. Feels like a nightmare.
 

Violet Jane

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Aug 23, 2021
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@Sarahkb, are your husband's family providing any support? Is there any possibility of your husband going and living with or staying with them?

It is a nightmare situation. It's so, so unfair.
 

Sarahkb

Registered User
Apr 3, 2022
55
0
Thank you for your reply. Both his parents died a few years ago, his mum had early onset dementia. His sister died recently from corticobasal degeneration which I believe is related to Frontotemporal dementia. She was in her mid 50’s. There is a strong genetic link. Both our children are adopted thankfully, the consultant was going to advise genetic testing but thankfully that’s one thing I have been spared.
He doesn’t have any family other than elderly aunts and cousins that don’t really bother. His brother in law and sisters children in their 20’s are dealing with their own grief and don’t talk to him as they believe he stole off them. It’s all very sad. He was very very close to his family snd has not managed to deal with his grief which I believe may have exacerbated the dementia, not helped anyway.
It’s literally just me. He has very few friends left.
 

grrth1314

Registered User
Mar 13, 2022
37
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hi @Sarahkb ...ive not been on this forum for a while but have found it really useful and informative...im in a similar situation to you as my 49yr old female partner has recently been diagnosed with FTD, and we have 2 kids (11 and 20 year old)...i work for a bank and have done a lot of research in this into financial support and other areas of support...all kept it in a spreadsheet which im happy to share...hopefully you have managed to get an answer on critical illness...my partner also has similar cover and from what i understand it can be invested in paying off your mortgage and the one asset they cant touch is the house...happy to help in any other way i can on this...
 

Aprilshowers

New member
Sep 7, 2022
2
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Hi Sarah,

I’m so sorry to hear about your difficult situation.

My mum has a diagnosis of Vascular Dementia and is 51 years old.

I have a few suggestions that may help: (you may have already done a few of these)
Contact your local authority and ask for a Care need assessment and a Carers assessment
Speak with local charities (Alzheimer’s Society or AGEUK and utilise any additional local support available)
It is worth looking online for a local charity maybe Dementia Connect or those listed above and asking for input from an Admiral Nurse (these are really helpful with complex cases of dementia and with behaviours that challenge)
Maybe worth finding some additional support (caters or personal assistants) that can help support your husband outside of the house to enable you and your children to have some much needed respite
For mum, we printed off/photocopied money and always made sure she had some to hand so it reduced anxiety surrounding this.
It sounds like you desperately need support as a family from social services, maybe even support to accommodate your husband to have a week or so respite, this will enable you and your family time to figure things out and it doesn’t have to be forever, maybe until he has been seen by the relevant mental health services / specialist services to support with aggression
Also ensure to speak with your husbands GP regarding the aggression, and ask for support from appropriate services, sometimes there are simple changes that can be made to routines, potential triggers that can be really effective

Just a few things, I hope they help!

Thinking of you all xx